Sunday, December 9, 2007

Sunday Evening Status

As many of you picked up, this morning was pretty devastating for us as it had appeared that Evie has a huge challenge to face in order to get off ECMO and survive. We cried in grief and confusion. We had those difficult but necessary conversations that people need to have about what to do in the worst case scenario. Its fair for everyone to know that from the clinical standpoint that Evie has big odds against her (and many unknowns). After a long morning of experiencing those depths, Nicole and I found some sense of resignation. While we are still highly emotional, we're also concluding that whatever will be will be. We are sad and scared. We haven't "made peace" with the idea of losing Evie, but we will not despair until we know for sure that the end has come. We will fight as long as she does, but not a moment longer.

All that said, Evie has yet again surprised us this afternoon with her fighting spirit. Once her vitals were stabilized just before noon, she has held steady. Though we won't know until tomorrow if she really has contracted an infection, she has yet to show signs of being overwhelmed by it. She is not running a fever, has good color, and stable vitals.

We've spent the entire day in Evie's company. We talk to her, sing to her, read to her, pray over her, and touch her. Tonight we've been given permission for one of us to stay in her room, so through the evening we'll continue to wait by her side.

Some where in the neighborhood of 9am on Monday morning we plan to begin to withdraw her from ECMO. We never know exactly when these things start and how long it will take. We really won't know one way or the other how this will go for hours after she's withdrawn. With that in mind, we'll encourage all of you not to read anything into our silence tomorrow. Time will move slowly.

24 comments:

Anonymous
said...

Dear Matt and Nicole,i will be in prayer stead fastly through hearing from you tomorrow. May this be a beautiful night with Evie as you continue to Love her into the a new day. God be with you, and we will continue the fight with you.Much love!Mary

Dear Evie, Matt, & Nicole, I am praying that our Lord will wrap his arms around you and give you strength and see you thru all this. Please Lord give Evie a lot of energy to endure what she has to continue to go thru. Matt and Nicole please hang in there it is so sad to see how you are suffering. We will always keep you in our prayers and thoughts. Love, Elaine and Bill

Matt,Nicole, and Evie, you are in our family's prayers and are constantly being lifted to God. I hope this night by her bedside will be a really precious time and that she'll be so strong tomorrow for all that is done. We're praying...

This is Kati Murphy, Seamus' mom. We met in the PICU waiting room last night and a friend of ours, Betsey Kloeppel in New Hampshire, sent us an email asking us if we had met you and asking us to pray for little Evangeline. How funny that we were talking about how far and wide our prayer chains for our children have reached, only for them to return back to us. We will continue to pray for Evie. If there is anything we can do for you, we are in room 214. Good luck tomorrow. May God be with her as she fights.

Nicole and Matt - It has been hard to know what to say. When we were experiencing the same with Dan, everything annoyed me--even though people were so thoughtful. As Danny struggled with pain and failing systems, I stopped praying for Dan's survival and asked that God make Dan's life mean something if He allowed Dan to survive. He did survive and brings happiness to those around him. And only God knows those who have become more compassionate and loving because of Dan.

I also thought of Dan's reception into heaven by those who had gone before us. Heaven--that place where our DNA is perfected and we no longer have the many disabilities caused by living on this earth; that place where there is no pain, no sorrow, loved ones who have gone before and the continual presence of Jesus. I found so much comfort in those thoughts during the nights when Dan was not supposed to survive until the next day.

God has allowed access to many people I know or have met that are praying for Evie--and for you. With tears in my eyes, I am so sorry the three of you have had to suffer this pain.

This night I pray for you love and peace beyond understanding and the ever present knowledge that God has his hand on Evie. I can hear the pain and exhaustion in your writing but I also hear the presents of hope even when you may feel it falling away. Evie is so fortunate to have the two of you to love her so fully. I will wait in prayer for God's answer. May it come with peace mercy and grace. With love The Benders

Dear Matt and Nichole, I can't describe the compassion I feel for you this morning. I just found out about Evie today, and I can't imagine what your hearts are feeling. Know that today Jesus is by her bedside holding her hand. He will not let go of her.

Dear Matt & NicoleYou continue to be covered in the warm blanket of love and prayer of so many. God's arms tightly surround the three of you - carrying you and providing the strength you need to go another hour, another day.

We haven't met. My daughter Ramona (born 11-26-06) is a patient at Children's and I heard about your little Evie through Kati Murphy.

My daughter was also diagnosed after birth and I can identify with the shock and grief I hear in your entries. We too were told many times that she might not survive and discussed hospice very seriously on three occasions.

Ramona just celebrated her first birthday. She is happy, she's spent a total of just 5 weeks in the hospital. She is developing normally for the most part.

I will be praying for your little girl. Praying for her recovery and praying also that the two of you will feel peace about any upcoming decisions you have to make regarding her care. You are her parents and the deep love and concern you feel for her will help God guide you in your new roles as caregivers.